First Pain Clinic Appt & Follow Up w PCP

Discussion in 'Fibromyalgia Main Forum' started by hermitlady, Mar 11, 2010.

  1. hermitlady

    hermitlady Member

    After waiting for a month, I finally had my appt this morning. Filled out all of the new pt paperwork, showing that I have pain from head to toe.

    The Dr was very nice and took a lot of time listening and talking to me, but in the end it was a waste of time. He told me that if I had pain in a specific area, that he could treat it, but since I have pain everywhere, he didn't have much to offer. What great news, huh?

    I told him I have a lot of muscle spasms in my back, so he poked at my back a few times and said, "Does this hurt?" I told him I would hurt if he poked me anywhere on my body like that! DUHHH. I told him my legs throb and ache, I have trouble sleeping because of it. "Hmm", he said. Pfffttt.

    He asked if I had had Xrays of my back etc, and I told him it had been several yrs since I"ve had any....But did he order any new xrays? Of course not. Next, I asked him (as he was walking out the door), if physical therapy would help the muscle spasms. He said yes and referred me to PT, gee glad I asked!!!! I don't know if I'll even bother going. I am so upset, and of course I'm having more pain than I already had because of stressing out.

    He offered Lyrica and Savella, but didn't want to give me Savella because I already take Prozac and he didn't feel comfortable messing w my ADs. I have a history of depr and I'm sure he didn't want to be liable for putting me back into a depr state...I'm already there anyway!

    Pts can't take Savella and Prozac together due to the possibility of Serotonin Syndrome. I told him I don't really want to go on Lyrica due to the side effects (and horror stories I've heard where it doesn't help much anyway) and that I'm very sensitive to these types of meds. He gave me samples of Lyrica anyway and said to try starting off at a low dose of 50mg for 5 days and build up to 75mg 2x day, then come back in 2 wks. Well, I finally just lost the 40 lbs that crept up on me from past meds, and I do not want to go there again. Plus, anything that has the side effect of making me tired and dizzy is not an option, I'm so tired and weak already from the FM/CFS. I'm not taking it!

    I'm beyond discouraged. I went off my pain meds 5 wks ago thinking I could get some alternative, non Narcotic treatments. Silly me, what was I thinking? I now have all of my family members and friends telling me, "You can't go back on those pain meds, they're so bad for you!". I don't even know if my PCP doc will prescribe them again if I ask for them. I have royally messed myself up, and I don't know what I'm going to do.

    This whole chronic pain thing is such a nightmare, I just wish I wouldn't wake up in the morning. Everyone tells me, be patient, you'll start to feel better....but they're not living in my body are they?

    I'm tired of living like this, or should I say, NOT LIVING. Now all I can think of is not wanting to live. I am so bummed....What on earth am I supposed to do? I feel like I've dug my own grave by going thru the detox and thinking that it would be healthier for me. All I've done is ruined my quality of life (what little I had)...and I have no other solutions.

    Vent over....thanks for "listening". I go to my PCP doc next Monday, he's going to have a lot of whining to listen to. I am so sick of all of this!!!!!!!!!!!!!!!!!!!!!!!
    [This Message was Edited on 03/15/2010]
  2. gapsych

    gapsych New Member

    Your legs ache and throb at night. Did he say anything about RLS or PLMD? Mirapex which is used for this has actually been used for FM pain but it is at a higher dose than for RLS and can be hard on the stomach.

    Lyrica, made me tired and dizzy. The two side effects you don't want. It did not help the pain and I had taken it long enough that it should have done something. The dizziness was overwhelming. But some people do really well on it.

    Have you tried Tramadol? It really helps me. For some reason narcotics don't. Tramadol or Ultram is technically not a narcotic.

    Google the following article, "Chronic Pain Harms the Brain." It tells why pain medications used judiciously are often warranted.

    Good luck.

    [This Message was Edited on 03/11/2010]
  3. luckyman

    luckyman New Member

    Hermit lady,

    Sorry to hear about your undertreatment of your pain. Narcotics, valium, and klonopin are about the only thing that I've tried that help. I've also found that backing off, or stopping for a while doesn't help, only increases the pain.

    Our doctors are being programmed to only use antidepressants, lyrica, and savella to treat this illness. They don't work for me. Lyrica has helped many, but with lots of side effects. Read my post on the topic "breathing problems". It is the last post (I think) and I talk about my experience with Lyrica.

    You may want to continue with the pain clinic, it could be of real help, or a dead end. Your choice whether you want to try the Lyrica, but most centers I've read about take a very conservative and progressive approach. If you decide to go back, I would tell them the Lyrica didn't work, unless you try it and it helps. If you don't try it, then you can say the prescription didn't help (because you never took it, but don't tell them) On the 2nd visit I would start asking for more help without alluding to narcotics. Feel them out, and talk with the receptionist or nurse on your way out to find out if they will really work with you to help control the pain, or if there is a "policy" about treating fm/cfs with a limited array of medications that your PCP could provide. They would be irresponsible to not start at the bottom of the ladder and work up. You just need to figure out if it's a 1 rung ladder!

    Personally, I would ask insurance not to pay for the 2nd office visit if they only patronize you and offer no help. They shouldn't have needed to see you again if all they are going to do is offer Lyrica, they should have told you to see your PCP for further treatment after the initial visit. I wouldn't bother talking with them on the day of the 2nd visit, if at all, otherwise you'll make yourself sicker. They have a responsibility to treat your pain, not just pad their wallets.

    If you live in Socal, I may have a recommendation for a pain clinic for you. It's really sad that our "standard treatment guidelines" are so narrow, and we are so disrespected and not believed. I feel for you and wish there was something I could do.

    When you see your PCP again, I would not whine too much, but impress him with examples of how your pain interfers with your life. Tell him that you really need to get the pain under control and get him to assure you that he will folow through. Hope you don't have to go doctor shopping, but they're wasting your time and money only makes things worse. Finally, don't refuse payment for nonservices until you get a copy of your records.

    You really deserve better, hope you find the right person/clinic.


  4. HeavenlyRN

    HeavenlyRN New Member

    ...I too have been through the pain clinic thing. I ended up having to seek a second opionion from a second pain doctor because my husband and I found it very difficult to get through the "front office staff."

    We like the second doctor very much. After some poking and prodding, he came to the conclusion that the pain I was feeling at the time was sacroiliitis. 4 days later I had cortisone injections in both sacro-iliac joints. That was abut 2 months ago and I've been ALMOST pain free in my lower back and legs since then. Unfortunately, I think I'm beginning to have problems again, but I'll wait it out and see.

    He felt that the pain I was experiencing in my legs at night was directly related to the sacro-iliac joints. I have restless leg syndrome and the sensations I was having at night were VERY different from the RLS.

    He suggested acupuncture and water-therapy. I did both until I was hospitalized for something unrelated and ended up with c-diff (a potentially contagious digestive tract infection which I contracted while in the hospital from antibiotics). So, I had to give up the therapy and acupuncture and haven't been able to go back for a while.

    I had previously had traditional physical therapy but that did not help. You might want to ask either your PCP or the pain specialist about the acupuncture and/or water therapy.

    Good luck

  5. Pebbles730

    Pebbles730 New Member

    I feel so bad for you hermitlady. I understand the stresses that you are going through with the illness and pressure from your family.

    My feeling is this. Don't let anyone make you feel guilty for having to take something for your pain. My doctor told me, our goal is not to make you better. Our goal is to help you function in life. He knows there is no miracle cure to this thing yet. Most doctors just want to give you some AD's and send you on your way. You get three choices, Lyrica, Savella and Cymbalta. I went to Rhumetologists, pain mgmt doctors, neurologists and ended up back at my general doctor where I should have stayed to begin with . I had MRI's blood tests, EMG's. All pointed to the same thing Fibro. So what I am saying is until there is a so called "cure" for this, do not feel bad if you need pain meds or anything else. This is very tough to have. Do family members make cancer patients feel bad for taking meds for their illness? No, because there is no miracle cure for that either. But they want their family member not to suffer. So why shouldn't Fibro patients have the same respect.
    I used to feel the guilt too. But I am lucky that I feel comfortable with my doctor and talk with him about exactly what is going on. That is the first step. Finding a doctor that you can really talk to and will listen. Second is to tell your family like it is. If they knew even one day what we suffer through, I doubt so many family members would react as they do. You just concentrate on finding yourself a good doctor with an understanding manner. Don't stress yourself out too much, dont' give up and just fight. This disease wants to break us down, or sometimes feels like it does. But don't you let it! Fight it back and you will get the help you need. Sometimes it just takes a little longer to find the right path.

  6. wendysj

    wendysj New Member

    Hi Hermit Lady,

    You are SO brave. To stop taking narcotics is incredibly difficult when you're in so much pain. That task alone is very impressive. You took a chance to try another treatment that might work better. You cannot feel like you failed yourself. You didn't. You wanted something better for yourself and had to courage to try to find just that. It's the medical community's failure to help us all - not ours.

    I remember when I first got sick, I hated going to sleep at night because I knew I had to wake up the next morning. What's so important for all of us to remember is you never know what tomorrow holds. I've experienced some of the happiest times of my life since those first few years when I nearly gave up. I'm so glad I hung on.

    It sounds like your family members are trying to help you. There is absolutely no way for them to understand the mental and physical battles you go through everyday. Even now, there are times I feel so alone and isolated. I have a great support system but they don't live with this dd every second of every day... I do. I decided years ago to do whatever is necessary to keep my quality of life as good as possible. I hope you keep this in mind when your deciding your treatment options.

    You'll stay in my thoughts, Hermitlady. Good luck with your appt on Monday.

  7. Janalynn

    Janalynn New Member

    How I wish I could be there in person for you. I really wish there was a way to exchange email addresses here!!

    You've gotten great support and advice already in the above posts.

    One thing I used to tell myself was I hated taking pain medication. Then I realized, that wasn't what I hated, what I hated was the fact that I had pain bad enough that I needed pain medication. I was/am darn grateful to have something to take when my pain is unbearable.

    That's why I wonder about detox. What do you do afterwards. Your pain from FM hasn't gone away. We are not addicts who need to get off of something because we are taking something out of habit or need to get high. (who even gets high??) We take pain medication to have some quality of life and sometimes just to have those moments where we can continue on.

    I understand why you went through detox. You needed to do that and I'll tell you, my friend, you did it! You are such a brave and strong woman - you haven't failed because you need something for pain again. You have Fibromyalgia!!!

    Pain clinics are really hit and miss as far as finding a good one that can help. Some don't seem to be terribly sympathetic. My Dr. originally told me we needed to find one that treated w/narcotics because that's what I was on. I won't even go into the Dr. I got. She even had Fibro. She contradicted herself so many times during my one and only appointment with her. I knew then that trusting her (or her word) was going to be too difficult to continue. I was on Norco at the time and she sat and racked her brain. I finally asked if there was anything slightly stronger but in the same 'class'. "OH yeah, good idea" she said. So we switched to Perocet. My Dr. then continued to prescribe.

    Chronic pain does a number on your brain, on your mind, on your emotions, on your body. You've got to feel like there is some hope, some help.

    You like your Dr. right? Do you not think that he would help you in this situation if you were completely honest and told him that you feel you can't go on with this pain. Tell him what you CAN'T do, how it affecting every part of your life.

    When can you get into see him again? I'd call Monday and get in as soon as possible. You at least need to know what your options are. Hang on a few more days. Tell the receptionist that it is very important you get in ASAP.

    Remember - this isn't about 'getting off drugs' because you had an "addiction" (in the true sense of the word). You have chronic pain - horrible chronic pain that can sometimes only be managed by pain medication - and even then that's only sometimes. What was the plan for your pain when you were detoxed? Hopefully your Dr. had some plan in mind.

    As far as others telling you 'they're bad for you' - Too bad. Don't tell them. They are made for pain for crying out loud. Get off the ones with Tylenol and you'll feel better about that. Norco isn't even that strong by the way.

    Obviously I could go on and on - that's why I wish we could email!

    Hang on sweetie - you haven't ruined your life, there is help for you!

  8. hermitlady

    hermitlady Member

    Thanx to all for the support and info. I've been feeling so bad that I haven't had the energy to reply. I just want to sleep to escape, the days are sooooo loooong.

    I appreciate all the info, I'll try to reply in more detail later if I have a sudden burst of energy. HA HA...I won't be holding my breath.

    I go to my PCP doc (who I love) tomorrow morning. I'm thinking of maybe trying Cymbalta or Savella first, before giving in to the narcotics so soon. Prozac has been the only AD that's helped my depr, I've tried sooo many ADs...except Savella (sounds like it has some scary side effects tho. I did take Cymbalta about 5 yrs ago for a couple of months, but at the time my depr was severe and it didn't help. Might give it another shot.

    I'm very discouraged, but still have a desire to stay off the pain meds longer to see if my body will settle down. 3 yrs of daily use is a long time, I can't really expect my body to recover fully in only 5 wks. My doc said give it at least 2 months. My BIL, who is a recovering Alcoholic, told me there's a saying in AA, "10 miles in, 10 miles out"...makes sense, but this better not take me 3 yrs to start feeling better, UGH.

    I really didn't like the way I was so dependent on the narcotics, sometimes counting the hrs til I could take the next pill. A slave to the prescription, but at least I could function. My pain level did indeed get higher when my dose wore it's more moderate, but constant. I do believe that it is true that the narcotics cause an increase in pain, I've lived it to tell about it!

    Again, thanks for helping me survive another day. You guys are a lifesaver, literally. I've been having some of those BAD thoughts lately, scary bad. It's hard to look forward to anything when you can barely get out of bed in the morning. I know you all understand.

    I'll be back later...........xooxo Hermit
  9. loto

    loto Member

    I went to a pain clinic once, and never went back. Didn't even consider it! The doctor there was no help to me at all. All he did was suggest PT, after I'd already told him PT doesn't help me.
    As far as your narcotic pain meds--I know I don't like being on them either, but to me, taking them is better than living in terrible pain all the time. My doctor assured me that as long as I don't take more than prescribed, I have nothing to worry about. Taking them, for me, is a better quality of life than living with the unbearable pain.
    I'm sorry I really don't have any good advice, but I totally understand what you're saying. I just wish there was 1 "magic treatment" that would help all of us FM sufferers.

  10. hermitlady

    hermitlady Member

    I had an appt w my PCP doc this morning, and he just shook his head when I told him about my visit to the pain clinic. As usual, he was very supportive and made me feel much better. He agreed that I shouldn't bother going back to that place, that he'd take care of me no matter what I need. Even said that if I need to, I could go back on narcotics...he knows how important quality of life is...he's great.

    Since I have some bio-chemical insufficiencies due to a genetic disorder, he said the ADs for FM probably wouldn't help me. He says I need to produce more serotonin, norepinephrine and dopamine in my system rather than reducing the reuptake as Savella and Cymbalta do. We're continuing to work on beefing up my biochem thru supplements.

    He wants me to take Creatine for 10 days to help regain strength in my muscles. I'm weak as a kitten, I've been so inactive for 2 mos now. This is a supp that body builders use, so we'll see if it helps. He also rx's it for the elderly and Parkinson's pts. Hopefully it will help, he said I should be able to feel it after a wk or so. It's hard to be active when you feel like all of your muscles are like rubber... blah.

    As far as the Lyrica goes, Dr said to just try 50mg at night for 2 wks to see if it helps. He explained how it helps the brain deal w pain signals (but I couldn't remember enough to repeat it). Since I don't want the side effects, he said a tiny dose may work for me. I'm so sensitive to meds, so less is often enough.

    So, we'll see, I trust him more than any Dr I've ever known. And he truly cares about me, he wants to help however he can. He actually does a lot of research on the genetic stuff I'm dealing w, and how it crosses over to Autism (both my kids have Autism traits), FM and CFS.

    He suggested some websites to check out, so I have some reading to do and some more supps to order.

    One strange thing I've noticed the last 2 days...I laid off the Tylenol and my pain level has decreased. He said the Tylenol can sometimes cause a type of rebound pain, could be what's happening. I'm going to stick to just the Celebrex and Ibuprofen to see if it's a coincidence or not.

    So, that's my story for today. I'm exhausted from going out and then running a couple of errands, so I've gotta take a rest. Thanks again sooooo much for all your posts and support.

    See you all later....H
  11. HeavenlyRN

    HeavenlyRN New Member

    ...please tell me you live in Western NY so I can go to your doctor! He sounds great.

    Aren't the "games" we have to play with meds incredible? At least your doc is willing to work with you. Now, if only your body would cooperate!

    If any of those websites pan out, would you let us know so we can take a look too? Thanks.

    Good luck with everything and keep us updated.


  12. hermitlady

    hermitlady Member

    It's just a short commute for you HeavenlyRN...come on down!

    I'll let you know if I find any good info...H
  13. rosemarie

    rosemarie Member

    I had a great pain doctor for 5 years but then his life got all screwed up because some women did not know how to follow the rules so when they could not get him to rx more and stronger pain meds they lied and accussed hiim of some bad things. AFter 2 trails he was found Not Guiity of all charges and guilty of one that was later dismissed. But he can't practice any more due to all the stuff that had been said about him.So I had to find a new doctor that would treat me and keep me on the same narcotics I have been on for the l last 7 yrs.
    I found a rheumy who agreed to treat me and keep me on my meds. But he is lousy a follow ups every month { I don't mind not paying the co-pay but it makes me feel like he cares less about me or if I am his patient.

    Acourding to the clinic he works for I can only get my meds filled once every 30 days, I have to call him and ask to have my scripts written to the nearest date. IF he is out of the office , or holidays and I have note called him earlier I am up a creek as my primary care doc is a gp who does not want to prescribe me any narcoitics, but will do so if my doc is not avaliabe. But only for 4-5 days. And then it costs me double to get my meds filled.

    .I have the 5 days and then the 30 days scripts that have to all be paid for. It does not matter how many are prescribed 5 or 105 I still have to pay for them twice and after doing it twoice I can't afford it so I end up trying to save up some for a day when I dont' have my doctor around.

    HE didn't even know that he had not seen me in a year. GReat ! I had to tell him and I said that a year is a long time to not check me out to see how I am doing with my meds if my pain is being taken care of, am I having more pain, less , feel worse, the only thing he cares about is that I have surgery on both my knees {total knee replacement} Like I want anyother surgery where I am going to be in more pain and he won't want to up my pain meds . I have had several surgeries and even though the pain from the surgery ease's my fibro flares up and never goes back to where it was on the pain scale before the surgeryI am so sick of being in pain and not having a doctor who will help me with my fibro.
    Yes I have other problems that cause pain. DDD, spinal stenosis, end stage oesteo arthritis in both knees , arthritis in my back, left wirst was shattered 6 yrs ago and has a titaium plate and 6 screws{ One of the screws is loose and wiggles, Dont' laugh at the loose screw stuff} buldging discs L4-L5 L5 - S1 fibro, most likely RLS too. I feel like I am falling apart.

    I have gone through all the female problems a woman can have, before I was married 4 year I had 4 laprerotimies{SP} , retograde menstartion, and eventully a total abdomial hyster with removal of both ovaries, tube, and cervix. There is no way I will get pregnant again. I dont' own enough female parts. I then had to hvae another surgery to fix the things that fell down after haveing the hyesterectomy. That was soooooo fun ! NOT!
    Then add the major surgery to fis my shattered left wrist and badly broken radius. I have reached the point where I dont' want to ever have another surgery again. I only end up in more and more pain that no one cares to help me live a semi normal life.

    I read about your visit with the pain doctor, stick with him and tell him how and why you are in pain what you would like him to help you deal with. Get your old meidcal records to show him old xrays, MRI's any thing that shows you have real pain and need to have him help you learn how to live with it and taking narcotics pain meds the least amount possiable but with the
    execption that if your pain gets worse he will help you to find a med that will help you do life a better life.

    I now need to find me that kind of doctor dont' know where or how to do it. TAke care keep your appointment I would skip the lyrica as you react to meds in teh class , I do too my rehumy keeps wanting to inject my knee's cause that will ease my pain, I did it one time and there is not enough money in the world to make me to it again , well if they could knock me out first so I would not have to feel the horrialbe pain from the injections I would do it.
    Rose Marie
  14. hermitlady

    hermitlady Member

    Rosemarie... I just finished replying to your post, then I saw you had replied to mine! Thanks for sharing and supporting me. I did take the 50mg Lyrica last night at bedtime, slept like a rock:) I'll try it for 2 wks and then decide if I want to keep taking it, we'll see.

    I am feeling so much better, I really think avoiding the Acetominophen is helping. I need to do a little research on that to see if I'm crazy or not, but my doc did agree w my theory. I am still quite rubbery feeling in my legs, it will take awhile to build up strength in my muscles again.

    My son is home sick w a fever/sore throat thing, I just hope I don't catch it! That is the last thing I need, I'm beefing up my immune system w extra vitamins and crossing my fingers.

    Hoping for a good day for us all............xoxo Hermit